TEDMED speaker, author, teacher, clinical ethicist, farmer, and mother of four. Currently CEO of the American Living Organ Donor Network.

Where's The Safety Net? Living Organ Donors Are People, Too

06/26/2016 08:21 pm ETUpdated
Jun 27, 2017

A pregnant woman in the early stages of labor rests in a hospital bed with her arms on her stomach. An IV is seen in her left hand.

What ever happened to being honest and fair? Yes, people are dying who need organs, but living organ donors are people, too. Recent movements to encourage living organ donation are misdirected. What living organ donors need is a safety net. To encourage donation in the absence of such precautions boarders on immoral.

The White House is working on putting together a Summit on high tech means of encouraging living organ donation and Representative Matt Cartwright just introduced the Organ Donor Clarification Act of 2016 to allow funding for pilot projects on nonmonetary incentives for living organ donation. Both these efforts are misdirected. The first because we should not be encouraging donation in the absence of the most basic donor protections and the second because incentives that encourage donation in the absence of such protections is a recipe for disaster.

Donors need paid leave for the time they take off to donate and recover from surgery. With only 12 percent of the U.S. working population having paid family leave (White House Summit on Family Leave ) and almost half Americans not having enough savings to take care of a $400 expense (See here), how do we expect the average American to afford being a living organ donor?

Donor don't have to cover their own medical costs, but they do have to take time off for testing, the donation surgery, and a month to three month's of recovery. They also need a caregiver, who is often someone in the same household, to take time off to be at the hospital with the donor and stay with the donor for the first week or so after returning home. And what if there are travel and lodging expense for the donor and caregiver? What about other potential costs such as childcare, home-care, or pet-sitting? All these things can add up to $10,000 or more that the donor has to "donate" on top of donating an organ. And what if the donor has complications -- ven rather mild complications like an infection can mean added weeks off work?

If a donor has complications, the organ recipient's insurance may cover the costs of treating that complication. There may be a debate over whether the complication is related to the donation or the time period for covering donor complications may have passed. Some recipient's go back to work and drop their Medicare coverage, leaving their donor without coverage. A recent article published on the Doctor's Lounge blog states that a shocking 16 percent of living organ donors don't have health insurance so if the recipient's insurance doesn't pay, the donor is stuck with the bill.

Complications are also not limited to physical complications or even the financial complications discussed above. During an online seminar for living organ donor advocates, the speaker shared that her preliminary data indicated that close to 30 percent of living organ donors experience post-donation depression (See here).

It is doubtful that a donor's request for counseling would be covered by an organ recipient's insurance. Sometimes transplant centers offer post-donation counseling, but the donors I've spoken to say the transplant center is the last place they want to go for such counseling since often their unhappiness stems from how the Center treated them. Or, they fear their recipient will find out, and they don't want to put a damper on the recipient's joy at having received a much needed organ.

For two years now I've been an independent living organ donor advocate who assists donors after their donation, and I've been shocked by how many donors feel abandoned. There are programs that help donors make it to the point of donation, but few that help them after they have donated. Donors need comprehensive medical coverage, coverage for lost wages, and coverage for psychological counseling, job security and much more. While there are some efforts underway, such as the Living Organ Donor Protection Act, that will bring donors under the umbrella of the the Family and Medical Leave Act, such protections, and the others I've mentioned, should be in place before any efforts are made to encourage the general public to become living organ donors. To launch incentive studies and media campaigns before a proper safety net is in place could be courting disaster. Just imagine dozens, if not hundreds, of angry and frustrated living organ donors sharing with friends, acquaintances, and the media how they faced financial and psychological complications they were never told were possible.

Consider Lou Ann, a social worker who thought donating a kidney would be a nice thing to do while she was between jobs. Lou Ann was enthusiastic about saving a life and still is glad she did, but she is also extremely disappointed with how she was treated post donation. Lou Ann told me:"I hate to put it so bluntly, but the truth is they tore out my kidney and then threw me in the trash." Lou Ann has good reason to feel abandoned, as do other donors.

If she had received immediate medical attention when she developed complications, perhaps her medical and financial troubles would not have snowballed into a nightmare she is still trying to escape. Within a year of donating, Lou Ann was jobless, homeless, and nearly $400,000 in debt. The transplant center where she donated a kidney is not returning her calls.

Lou Ann is not alone. We know that approximately 10% of living organ donors suffer complications (see p.15 at here). As a volunteer for the American Living Organ Donor Network, I receive calls and emails almost every day from living organ donors who need help with post donation expenses -- mostly lost wages and medical expenses not covered by the organ recipient's insurance.

We need to think this problem through carefully. It doesn't really matter how many donors like Lou Ann there are. No one who has sacrificed to save a life should be abandoned by society. Whether through private charities or a government program, it would be a mistake not to make sure there is a safety net in place before we start encouraging Americans to take the risks -- both medical and financial -- associated with living organ donation.